Stephanie Rohn was 21 years old and living in Mississippi, far from her parents’ home in Manhasset, New York, when she suddenly experienced a series of brief blackouts. “I didn’t know what it was,” she recalls. “I was going through a lot at the time, so I thought they were small panic attacks.” One of her roommates disagreed. “She was really adamant that it wasn’t a panic attack,” says Stephanie. Sensing that this was something more serious, the roommate took a video of Stephanie’s next episode and sent it to her parents, who urged their daughter to go to a local hospital to get checked out.
“That’s where they found my brain tumor,” Stephanie says. Her roommate had been correct that the episodes were not panic attacks. She had experienced a grand mal seizure, which includes a loss of consciousness, violent muscle contractions, or both. Typically associated with epilepsy, a grand mal seizure can also be trigged by a high fever, a stroke, or even low blood sugar. In some cases, like Stephanie’s, they can signal the presence of a brain tumor.
Young and far from home, Stephanie didn’t have a clue what to do. Thankfully, an aunt was able to help connect Stephanie with brain tumor experts in New York, so she could be home with her family while being treated. That’s how Stephanie came to meet neuro-oncologist Howard Fine, MD, and neurosurgeon Rohan Ramakrishna, MD, at NewYork-Presbyterian Weill Cornell Medicine, Co-Directors of the Rhodes Center for Glioblastoma.
Dr. Fine and Dr. Ramakrishna specialize in the treatment of gliomas — a type of tumor that starts in the brain or spine’s glial cells. Fortunately for Stephanie her tumor was low grade, with a much better prognosis than many other types of gliomas. “When treating brain tumors, we often deal with glioblastoma, which is a more serious matter,” says Dr. Ramakrishna. “But once we saw Stephanie’s tumor, we knew it was something we could likely treat effectively with multi-modal therapy, including surgery, chemotherapy, and radiation.”
Dr. Fine agrees. “Stephanie’s tumor was very typical,” he says. “I’ve dedicated my career to patients with brain tumors and have been involved in more than 100 brain tumor clinical trials. The best way to go was to surgically remove her tumor so that she could live without seizures for the rest of her life. I knew she’d be in good hands with Rohan in the OR.”
“I couldn’t have asked for better doctors,” says Stephanie. “The entire experience was very scary — it seemed to come out of nowhere. But they kept me calm.” Dr. Ramakrishna and Dr. Fine kept assuring her things would be okay. “The advantage of being at a high-volume brain tumor center is that we have extensive experience with tumors like Stephanie’s,” says Dr. Ramakrishna. “These cases may be routine to us, but we know they are not routine to the patient. We take every case as seriously as the next.”
Several months after the seizures began, Stephanie walked into NewYork-Presbyterian Weill Cornell Medical Center feeling nervous. “I remember being brought into the operating room and telling the nurses and doctors present that I have very aggressive anxiety. I was very scared,” she recalls. As she was being given the anesthesia, a nurse held her hand and told her to count backwards from ten. “I think the last number I remember was seven!” Stephanie recalls. “The next thing I knew, I was in the recovery room and my mother was on her way in to be with me. They said everything went great.”
“Stephanie’s tumor was actually quite anatomically complex," says Dr. Ramakrishna. "It involved a portion of the brain called the insula, which requires specialized techniques including brain mapping to remove safely.”
Dr. Ramakrishna was thrilled with Stephanie’s outcome. “Stephanie’s surgery was a success, and each surgery teaches us something new about the tumors we strive to eradicate,” he says. “Brain tumors can range in severity and affect people neurologically in different and sometimes profound ways. But Stephanie did beautifully with her surgery, as we were able to remove all of the disease seen on her MRI without causing new neurologic problems. And that’s a great outcome for someone so young.”
Because gliomas cannot usually be cured with surgery alone, Stephanie had to undergo chemotherapy and radiation therapy to try to get rid of any remaining tumor cells. “It left me extremely fatigued,” she says, “but in the end it was so worth it to not be having daily seizures anymore.”
Now back home in Manhasset, Stephanie is spending quality time with her family and dedicating herself to resting and recovering. She has reflected a good deal on her situation, and she has some words of wisdom for anyone going through the same thing: “It’s very scary to hear that you have a tumor, and nobody likes surgery, but this isn’t nearly as scary as you’d think brain surgery would be… especially when you have such wonderful doctors on your team!”
